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Volumn 8, Issue 1, 2015, Pages 63-71

Marking shifts in human research ethics in the development of biobanking

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; BIOBANK; DATA BASE; HEALTH CARE SYSTEM; HUMAN; HUMAN RIGHTS ABUSE; MEDICAL RESEARCH; PARTICIPATORY MANAGEMENT; PRIORITY JOURNAL; PROFESSIONAL STANDARD; RESEARCH ETHICS; RESEARCH SUBJECT; SOCIAL WELFARE; TRUST;

EID: 84926672688     PISSN: 17549973     EISSN: 17549981     Source Type: Journal    
DOI: 10.1093/phe/phu023     Document Type: Article
Times cited : (12)

References (75)
  • 1
    • 84926681605 scopus 로고    scopus 로고
    • American College of Medical Genetics and Genomics. American College of Medical Genetics and Genomics, accessed 30 July 2014
    • American College of Medical Genetics and Genomics. (2014). Incidental Findings in Clinical Genomics: A Clarification. American College of Medical Genetics and Genomics, available from: https:// www. acmg. net/docs/Incidental-Findings-in-Clinical- Genomics-A-Clarication. pdf [accessed 30 July 2014].
    • (2014) Incidental Findings in Clinical Genomics: A Clarification
  • 2
    • 84862661551 scopus 로고    scopus 로고
    • Australian Government National Health and Medical Research Council. Australian Government, [accessed 24 July 2014]
    • Australian Government National Health and Medical Research Council. (2010). Biobanks Information Paper. Australian Government, available from: http://www. nhmrc. gov. au/-files-nhmrc/file/your- health/egenetics/practioners/biobanks-information- paper. pdf [accessed 24 July 2014].
    • (2010) Biobanks Information Paper
  • 3
    • 0036187419 scopus 로고    scopus 로고
    • Reflections and recommendations on research ethics in developing countries
    • 1132
    • Benatar, S. (2002). Reflections and Recommendations on Research Ethics in Developing Countries. Social Science and Medicine, 54, 1131-1141; 1132.
    • (2002) Social Science and Medicine , vol.54 , pp. 1131-1141
    • Benatar, S.1
  • 5
    • 33644821535 scopus 로고    scopus 로고
    • Towards an international system of ethics and governance of biobanks: A "special status" for genetic data?
    • Bovenberg, J. (2005). Towards an International System of Ethics and Governance of Biobanks: A "Special Status" for Genetic Data? Critical Public Health, 15, 369-383.
    • (2005) Critical Public Health , vol.15 , pp. 369-383
    • Bovenberg, J.1
  • 6
    • 36048999422 scopus 로고    scopus 로고
    • Proposing modesty for informed consent
    • Burgess, M. M. (2007). Proposing Modesty for Informed Consent. Social Science and Medicine, 65, 2284-2295.
    • (2007) Social Science and Medicine , vol.65 , pp. 2284-2295
    • Burgess, M.M.1
  • 7
    • 84892474244 scopus 로고    scopus 로고
    • From 'trust us' to participatory governance: Deliberative publics and science policy
    • Burgess, M. M. (2014). From 'trust us' to Participatory Governance: Deliberative Publics and Science Policy. Public Understanding of Science, 23, 48-52.
    • (2014) Public Understanding of Science , vol.23 , pp. 48-52
    • Burgess, M.M.1
  • 8
    • 58149223088 scopus 로고    scopus 로고
    • The ethical challenges of genetic databases: Safeguarding altruism and trust
    • Campbell, A. V. (2007). The Ethical Challenges of Genetic Databases: Safeguarding Altruism and Trust. King's Law Journal, 18, 237-245.
    • (2007) King's Law Journal , vol.18 , pp. 237-245
    • Campbell, A.V.1
  • 10
    • 84870892051 scopus 로고    scopus 로고
    • The public interest, public goods, and third-party access to UK biobank
    • Capps, B. (2012). The Public Interest, Public Goods, and Third-Party Access to UK Biobank. Public Health Ethics, 5, 240-251.
    • (2012) Public Health Ethics , vol.5 , pp. 240-251
    • Capps, B.1
  • 12
    • 38549099198 scopus 로고    scopus 로고
    • Biobanks and blanket consent: The proper place of the public good and public perception rationales
    • Caulfield, T. (2007). Biobanks and Blanket Consent: The Proper Place of the Public Good and Public Perception Rationales. King's Law Journal, 18, 209-226.
    • (2007) King's Law Journal , vol.18 , pp. 209-226
    • Caulfield, T.1
  • 13
  • 14
    • 42449114100 scopus 로고    scopus 로고
    • Human genetic research databases and biobanks
    • Chalmers, D. and Nicol, D. (2008). Human Genetic Research Databases and Biobanks. Journal of Law and Medicine, 15, 538-554.
    • (2008) Journal of Law and Medicine , vol.15 , pp. 538-554
    • Chalmers, D.1    Nicol, D.2
  • 15
    • 3242771560 scopus 로고    scopus 로고
    • Commercialisation of biotechnology: Public trust and research
    • Chalmers, D. and Nicol, D. (2004). Commercialisation of Biotechnology: Public Trust and Research. International Journal of Biotechnology, 6, 116-133.
    • (2004) International Journal of Biotechnology , vol.6 , pp. 116-133
    • Chalmers, D.1    Nicol, D.2
  • 16
    • 84942918907 scopus 로고    scopus 로고
    • A role for research ethics committees in exchanges of biospecimens through material transfer agreements
    • Chalmers, D., Nicol, D., Nicolas, P. and Zeps, N. (2014). A Role for Research Ethics Committees in Exchanges of Biospecimens Through Material Transfer Agreements. Journal of Bioethical Inquiry, 11, 301-306.
    • (2014) Journal of Bioethical Inquiry , vol.11 , pp. 301-306
    • Chalmers, D.1    Nicol, D.2    Nicolas, P.3    Zeps, N.4
  • 20
    • 33745956333 scopus 로고    scopus 로고
    • Encouraging translational research through harmonization of fda and common-rule informed consent requirements for research with banked specimens
    • Evans, B. J. and Meslin, E. M. (2006). Encouraging Translational Research Through Harmonization of FDA and Common-rule Informed Consent Requirements for Research with Banked Specimens. Journal of Legal Medicine, 27, 119-166.
    • (2006) Journal of Legal Medicine , vol.27 , pp. 119-166
    • Evans, B.J.1    Meslin, E.M.2
  • 23
    • 14644413526 scopus 로고    scopus 로고
    • The challenge of assuring continued post-trial access to beneficial treatment
    • Grady, C. (2005). The Challenge of Assuring Continued Post-trial Access to Beneficial Treatment. Yale Journal of Health Policy, Law, and Ethics, 1, 425-435.
    • (2005) Yale Journal of Health Policy, Law, and Ethics , vol.1 , pp. 425-435
    • Grady, C.1
  • 25
    • 33344475590 scopus 로고    scopus 로고
    • Should donors be allowed to give broad confsent to future biobank research?
    • Hansson, M., Dillner, J., Bartram, C., Carlson, J. and Helgesson, G. (2006). Should Donors be Allowed to Give Broad Confsent to Future Biobank Research? The Lancet Oncology, 7, 266-269.
    • (2006) The Lancet Oncology , vol.7 , pp. 266-269
    • Hansson, M.1    Dillner, J.2    Bartram, C.3    Carlson, J.4    Helgesson, G.5
  • 29
    • 77951115122 scopus 로고    scopus 로고
    • International network of cancer genome projects
    • Hudson, T. (2010). International Network of Cancer Genome Projects. Nature, 464, 993-998.
    • (2010) Nature , vol.464 , pp. 993-998
    • Hudson, T.1
  • 30
    • 84859488836 scopus 로고    scopus 로고
    • On sharing quantitative trait gwas results in an era of multiple-omics and the limits of genomic privacy
    • Im, H. K., Gamazon, E., Nicolae, D. and Cox, N. (2012). On Sharing Quantitative Trait GWAS Results in an era of Multiple-omics and the Limits of Genomic Privacy. American Journal of Human Genetics, 90, 591-598.
    • (2012) American Journal of Human Genetics , vol.90 , pp. 591-598
    • Im, H.K.1    Gamazon, E.2    Nicolae, D.3    Cox, N.4
  • 31
    • 48349108322 scopus 로고    scopus 로고
    • Best practices for repositories: Collection, storage, retrieval and distribution of biological materials for research
    • ISBER.
    • ISBER. (2008). Best Practices for Repositories: Collection, Storage, Retrieval and Distribution of Biological Materials for Research. Cell Preservation Technology, 6, 1-58.
    • (2008) Cell Preservation Technology , vol.6 , pp. 1-58
  • 32
    • 80053307605 scopus 로고    scopus 로고
    • From single biobanks to international networks: Developing e-governance
    • Kaye, J. (2011). From Single Biobanks to International Networks: Developing e-governance. Human Genetics, 130, 377-382.
    • (2011) Human Genetics , vol.130 , pp. 377-382
    • Kaye, J.1
  • 33
    • 48349137285 scopus 로고    scopus 로고
    • Governing genetic databases: Collection, storage and use
    • Kaye, J. (2007). Governing Genetic Databases: Collection, Storage and Use. King's Law Journal, 18, 201-208.
    • (2007) King's Law Journal , vol.18 , pp. 201-208
    • Kaye, J.1
  • 39
    • 10644282182 scopus 로고    scopus 로고
    • Human genetic research: Emerging trends in ethics
    • Knoppers, B. M. and Chadwick, R. (2006). Human Genetic Research: Emerging Trends in Ethics. Nature Reviews Genetics, 6, 75-79.
    • (2006) Nature Reviews Genetics , vol.6 , pp. 75-79
    • Knoppers, B.M.1    Chadwick, R.2
  • 40
    • 16644401011 scopus 로고    scopus 로고
    • Beyond the rhetoric: Population genetics and benefit-sharing
    • Knoppers, B. M. and Sheremeta, L. (2003). Beyond the Rhetoric: Population Genetics and Benefit-sharing. Health Law Journal, 11, 89-117.
    • (2003) Health Law Journal , vol.11 , pp. 89-117
    • Knoppers, B.M.1    Sheremeta, L.2
  • 41
    • 84882449721 scopus 로고    scopus 로고
    • Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?
    • Kristin, S., Bjørn Kåre, M. and Berge, S. (2013). Broad Consent Versus Dynamic Consent in Biobank Research: Is Passive Participation an Ethical Problem? European Journal of Human Genetics, 21, 897-902.
    • (2013) European Journal of Human Genetics , vol.21 , pp. 897-902
    • Kristin, S.1    Bjørn Kåre, M.2    Berge, S.3
  • 42
    • 48349127513 scopus 로고    scopus 로고
    • Consent for biobanking: Lack of dissent when opting-in does not necessarily support 'opt-out'
    • Laurie, G. (2008). Consent for Biobanking: Lack of Dissent When Opting-in Does Not Necessarily Support 'opt-out'. British Medical Journal, 337, 186-187.
    • British Medical Journal , vol.337 , pp. 186-187
    • Laurie, G.1
  • 43
    • 84880097758 scopus 로고    scopus 로고
    • Protecting health research subjects: A jurisdictional analysis
    • Llewellyn, J., Downie, J. and Holmes, R. (2003). Protecting Health Research Subjects: A Jurisdictional Analysis. Health Law Journal, pp. 207-242.
    • (2003) Health Law Journal , pp. 207-242
    • Llewellyn, J.1    Downie, J.2    Holmes, R.3
  • 46
    • 13844275522 scopus 로고    scopus 로고
    • Regulating research and experimentation: A view from the UK
    • McLean, S. (2004). Regulating Research and Experimentation: A View from the UK. Journal of Law Medicine and Ethics, 32, 604-612.
    • (2004) Journal of Law Medicine and Ethics , vol.32 , pp. 604-612
    • McLean, S.1
  • 48
    • 0032501363 scopus 로고    scopus 로고
    • Updating protections for human subjects involved in research
    • Moreno, J., Caplan, A. L. and Wolpe, P. R. (1998). Updating Protections for Human Subjects Involved in Research. JAMA, 280, 1951-1958.
    • (1998) JAMA , vol.280 , pp. 1951-1958
    • Moreno, J.1    Caplan, A.L.2    Wolpe, P.R.3
  • 49
    • 84926668577 scopus 로고
    • National Institutes of Health Revitalization Act. [accessed 2 September 2014]
    • National Institutes of Health Revitalization Act. (1993). Available from: http://orwh. od. nih. gov/about /pdf/NIH-Revitalization-Act-1993. pdf [accessed 2 September 2014].
    • (1993)
  • 51
    • 84880901378 scopus 로고    scopus 로고
    • National Cancer Institute. U. S. Department of Health and Human Services. [accessed 30 July 2014]
    • National Cancer Institute. (2013). Cancer Genome Atlas. U. S. Department of Health and Human Services, available from: http://cancergenome. nih. gov/ [accessed 30 July 2014].
    • (2013) Cancer Genome Atlas
  • 52
    • 84860153905 scopus 로고    scopus 로고
    • National Cancer Institute. National Institutes of Health. accessed 30 July 2014
    • National Cancer Institute. (2011). Best Practices for Biospecimen Resources. National Institutes of Health, available from: http://biospecimens. cancer. gov/bestpractices/2011-NCIBestPractices. pdf [accessed 30 July 2014].
    • (2011) Best Practices for Biospecimen Resources
  • 54
    • 34548169034 scopus 로고    scopus 로고
    • Public trust, intellectual property and human genetic databases; The need to address benefit sharing
    • Nicol, D. (2006). Public Trust, Intellectual Property and Human Genetic Databases; the Need to Address Benefit Sharing. Journal of International Biotechnology Law, 3, 89-103.
    • (2006) Journal of International Biotechnology Law , vol.3 , pp. 89-103
    • Nicol, D.1
  • 55
    • 84881883364 scopus 로고    scopus 로고
    • Standards for biobank access and intellectual property
    • In Rimmer, M. and McLennan, A. (eds). Cheltenham UK: Queen Mary Studies in Intellectual Property, Edward Elgar
    • Nicol, D. and Gold, E. R. (2012). Standards for biobank access and intellectual property. In Rimmer, M. and McLennan, A. (eds), Intellectual Property and Emerging Technologies: The New Biology. Cheltenham UK: Queen Mary Studies in Intellectual Property, Edward Elgar, pp. 133-157.
    • (2012) Intellectual Property and Emerging Technologies: The New Biology , pp. 133-157
    • Nicol, D.1    Gold, E.R.2
  • 58
    • 77957594024 scopus 로고    scopus 로고
    • Broken promises of privacy: Responding to the surprising failure of anonymization
    • Ohm, P. (2010). Broken Promises of Privacy: Responding to the Surprising Failure of Anonymization. UCLA Law Review, 57, 1701-1777.
    • (2010) UCLA Law Review , vol.57 , pp. 1701-1777
    • Ohm, P.1
  • 59
    • 84926649790 scopus 로고    scopus 로고
    • Public Population Project in Genomics and Society. accessed 20 July 2014
    • Public Population Project in Genomics and Society. (2005). Ethics Governance and Public Engagement, available from: http://www. p3gobservatory. org/re pository/ethics. htm [accessed 20 July 2014].
    • (2005) Ethics Governance and Public Engagement
  • 60
    • 84860329478 scopus 로고    scopus 로고
    • Baysian method to predict individual SNP genotypes from gene expression data
    • Schadt, E., Woo, S. and Hao, K. (2012). Baysian Method to Predict Individual SNP Genotypes from Gene Expression Data. Nature Genetics, 44, 603-608.
    • (2012) Nature Genetics , vol.44 , pp. 603-608
    • Schadt, E.1    Woo, S.2    Hao, K.3
  • 61
    • 0035849989 scopus 로고    scopus 로고
    • Ethical issues in the design and conduct of clinical trials in developing countries
    • Shapiro, H. T. and Meslin, E. M. (2001). Ethical Issues in the Design and Conduct of Clinical Trials in Developing Countries. New England Journal of Medicine, 345, 139-141.
    • (2001) New England Journal of Medicine , vol.345 , pp. 139-141
    • Shapiro, H.T.1    Meslin, E.M.2
  • 62
    • 80655139255 scopus 로고    scopus 로고
    • Can broad consent be informed consent?
    • Sheehan, M. (2011). Can Broad Consent Be Informed Consent? Public Health Ethics, 4, 226-235.
    • (2011) Public Health Ethics , vol.4 , pp. 226-235
    • Sheehan, M.1
  • 63
    • 84889048941 scopus 로고    scopus 로고
    • Reforming biobank consent policy: A necessary move away from broad consent toward dynamic consent
    • Stein, D. T. and Terry, S. F. (2013). Reforming Biobank Consent Policy: A Necessary Move Away from Broad Consent Toward Dynamic Consent. Genetic Testing and Molecular Biomarkers, 17, 855-856.
    • (2013) Genetic Testing and Molecular Biomarkers , vol.17 , pp. 855-856
    • Stein, D.T.1    Terry, S.F.2
  • 66
    • 84926675804 scopus 로고    scopus 로고
    • Susan G Komen for the Cure. [accessed 30 July 2014]
    • Susan G Komen for the Cure. (2011). Tissue Bank at the IU Simon Cancer Center, available from: https://ko mentissuebank. iu. edu/ [accessed 30 July 2014].
    • (2011) Tissue Bank at the IU Simon Cancer Center
  • 67
    • 55549116026 scopus 로고    scopus 로고
    • Personal genomes: When consent gets in the way
    • Taylor, P. (2008). Personal Genomes: When Consent Gets in the Way. Nature, 456, 32-33.
    • (2008) Nature , vol.456 , pp. 32-33
    • Taylor, P.1
  • 68
    • 84926623003 scopus 로고    scopus 로고
    • UK Biobank. accessed 24 July 2014
    • UK Biobank. (2007). Ethical and Governance Framework, available from: http://www. ukbiobank. ac. uk/wp-content/uploads/2011/05/EGF20082. pdf [accessed 24 July 2014].
    • (2007) Ethical and Governance Framework
  • 69
    • 33645229263 scopus 로고    scopus 로고
    • [accessed 30 July 2014]
    • UNESCO. (2005). Universal Declaration on Bioethics and Human Rights, available from: http://portal. unesco. org/en/ev. php-URL-ID=31058&URL-DO= DO-TOPIC&URL-SECTION=201. html [accessed 30 July 2014].
    • (2005) Universal Declaration on Bioethics and Human Rights
  • 70
    • 82555167177 scopus 로고    scopus 로고
    • US Department of Health and Human Services. [accessed 30 July 2014]
    • US Department of Health and Human Services. (2011). Advance Notice of Proposed Rulemaking for Revisions to the Common Rule, available from: http://www. hhs. gov/ohrp/humansubjects/anprm2011page. html [accessed 30 July 2014].
    • (2011) Advance Notice of Proposed Rulemaking for Revisions to the Common Rule
  • 71
    • 84926628556 scopus 로고    scopus 로고
    • Vanderbilt University Medical Center, accessed 30 July 2014
    • Vanderbilt University Medical Center. (2012). Vanderbilt DNA Databank, available from: https://medschool. vanderbilt. edu/dbmi/biovu-vanderbilts-dna-databank [accessed 30 July 2014].
    • (2012) Vanderbilt DNA Databank
  • 72
    • 34547950328 scopus 로고    scopus 로고
    • Partnership in U. K. Biobank: A third way for genomic property?
    • Winickoff, D. E. (2007). Partnership in U. K. Biobank: A Third Way for Genomic Property? Journal of Law, Medicine and Ethics, 35, 440-456.
    • (2007) Journal of Law, Medicine and Ethics , vol.35 , pp. 440-456
    • Winickoff, D.E.1
  • 75
    • 40649099658 scopus 로고    scopus 로고
    • Should post-trial provision of beneficial experimental interventions be mandatory in developing countries?
    • Zong, Z. (2008). Should Post-trial Provision of Beneficial Experimental Interventions be Mandatory in Developing Countries?' Journal of Medical Ethics, 34, 188-192.
    • (2008) Journal of Medical Ethics , vol.34 , pp. 188-192
    • Zong, Z.1


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